Becoming extremely gluten sensitive after going gluten free?

[DebJ14]

You could also have other food allergies or sensitivities. After being really vigilant for a year one Thanksgiving I felt like I did before going gluten-free.  The doctor had me come in the next day for blood work. It turned out that my first gluten free Thanksgiving extravaganza was just poison for my system.  The gluten free stuffing contained yeast - off the charts allergic to it.  Also I had a sensitivity to cranberries, cinnamon, vanilla, oysters (also in the stuffing) and a bunch of other foods.  The day the doctor called I was getting ready for our New Years Eve dinner.  He asked what was on the menu and I said Prime Rib. He said nope - allergic to beef too!  I was taken off all the foods I tested positive to on the sensitivity test for a couple of years and then slowly added them back in. I can tolerate some of them every once in a while.  But, the Casein, Beef and Yeast have been off the menu ever since because they are true IgE allergies.

[Adele Williams]

Hello,

I was diagnosed with Celiac over 10 years ago and since then my sensitivity ranges from migraines, fatigue, bloating, tired eyes and just bla if I get into it. Gluten Digest pills do relieve some of the symptoms. My father has DH and my daughter has Celiac, they both get rashes when they are exposed. If you find yourself in Denver try and make a trip to Just Be Kitchen, it is amazing and down by the Aquarium area.  

[Richard D]

The most obvious symptoms from Celiac/NCGS are not a very consistent indicators, which makes these discussions very confusing. The primary outcomes of gluten exposure with Celiac (and I think for NCGS too?) are 1) underdigested dietary fat and 2) inflammation.

For #1, those are the GI consequences you hear the most about. People respond in different ways, but the core is generally the same: your GI track goes into overdrive and tries to get the fat out of your intestines as quickly as possible, one way or another.

For #2, where that inflammation will occur, how long it will last, how long it will take to go away, etc. all vary person to person, depending on your own genetics, how healthy you are otherwise, how quickly you usually heal from injury, etc., which are themselves affected by how long it's been since you've been gluten-free and successfully avoided cross-contamination.  Some people have inflammation in the brain (huge range of neurological/psych issues possible here), some have inflammation of the body (nerve pain, muscle aches, all sorts of things).

One weird side effect of going gluten-free is that if you've been having gluten for many years, you've been creating chronic inflammation in places that should not have been inflamed at all, let alone constantly. So when those areas finally get back to normal, they are weaker than they used to be, and that seems to be associated with new allergies. 

Another effect is that because you've experienced not-being-inflamed, re-inflaming is very noticeable and very unpleasant.  The thing is, it's probably not much worse than it was before you went gluten-free, but you're now paying A LOT of attention to your food-related quality of life versus when you were eating gluten.

My wife still reminds me of just how much I would complain about chronic stomach pain, fatigue, multiple midnight bathroom runs over the week, etc etc pre-diagnosis, and I don't myself remember it being quite that bad.  But given what happens now when I get cross-contaminated... I do believe it.

As to mysteriously getting gluten symptoms while gluten-free - I would suggest a gluten-free house, and having professional cleaners scrub the crap out of all of your kitchen surfaces and appliances on a "switchover" day where you throw out everything not-gluten-free. I tried to get by with a mixed household (me gluten-free and no one else) for a couple years after diagnosis, and I would still get glutened at least once a month. It's extremely hard to do if there's gluten anywhere in the house; it just takes one person dropping crumbs on a counter top and you touching that counter top at any point later. Only after you are 100% confident there is no gluten anywhere in your life (including no eating out at restaurants for a while) for 3 months or so would I suggest trying to figure out if you're sensitive or allergic to anything else.

[Felix Nuts Tomcat]

Stuff fried in the same fryer as breaded items -- diarrhea and vomiting that lasts three days.

Forget about Subway.  I get sick every time I eat there.  I'll have to take a look at the gluten digest pills to take before I eat out.  All the glutening accidents have happened at restaurants.

[Fenrir]

5 minutes ago, Felix Nuts Tomcat said:

Stuff fried in the same fryer as breaded items -- diarrhea and vomiting that lasts three days.

Forget about Subway.  I get sick every time I eat there.  I'll have to take a look at the gluten digest pills to take before I eat out.  All the glutening accidents have happened at restaurants.

If you're going to get a gluten digest get one with Aspergillus Niger 300mg or more. Nothing else is actually scientifically supported. GliadinX is probably the best thing on the market right now but it's only really recommended to ease cross contamination.